This is a new section on the orphan disease referred to as Porphyria.
Today, many
cases of Gulf War Syndrome are also being classified as a form of porphyria
and I have learned that although this is classified as an orphan disease
is not but is instead a rather common disease which is often just not considered
by a physician.

The information that I have received from people with this disease regarding
Kaiser and the Permanente, indicates to me that in my opinion this is over
the heads of most Kaiser physicians. This disease is really not that
rare however it is often misdiagnosed as many other different conditions
or diseases. The testing for Porphyria is not that complex, however
it is currently done at only a few facilities in the world. I believe
this is because most physicians have very little knowledge of this disease,
or else they would indeed order the testing on a more regular basis. Again
the testing is non invasive and not complex. Generally it is just
a urine or blood test that is sent out to a lab.

Kaiser is known for treating just about all diseases and conditions
with drugs. Unfortunately for the misdiagnosed Porphyria patient,
drugs are really the last thing they should have prescribed for them.
Testing is inexpensive when you consider the cost for treatment of
misdiagnosed diseases that Kaiser often treats patients for. Porphyria
testing should be done on a more routine basis.